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Acoustic Neuroma Surgery: A Patient's Perspective

by Gary Hunt

Disclaimer: This account is my own and I make no promises as to every medical detail being accurate, the events are as just as I recalled them. Any opinion expressed is entirely my own. I can't promise that each surgery will go exactly like this one, but hope that it offers some insight from a personal perspective. Consult your physician for details.

July 31, 1995

I went in for a routine physical from my primary care physician. I hadn't gone in about 5 years and felt that I should (actually, my wife felt this way). Having an irrational aversion to physicals, combined with being unusually healthy most of my life, has made me a bit lackadaisical. The main reason I decided to have one was that I noticed some hemospermia (blood in the ejaculate). Although this sounds alarming, it is usually not a big deal and can be common. After being referred to a urologist, a bacterial infection was diagnosed and time and antibiotics took care of the problem. Anyway, at the end of physical, I just causally mentioned that I did not think the hearing in my right ear was as good as it usually was. I indicated that I was aware of some loss for the last 5 years, but it was not an inconvenience. About 6 months earlier, it seemed to worsen a bit. A simple audiogram was performed and it was clear that, in certain frequencies, the hearing in my right ear was not normal. I was referred to an ENT (Ear, Nose, and Throat doctor).

August 18, 1995

At the ENT's office, more sophisticated hearing tests were performed. One of the tests involved sending some sound waves at the ear and noting the wave forms produced, which indicates the functioning of the acoustic nerve. Since the wave patterns produced were not normal for my right ear, they decided to go ahead and order an MRI to get more detailed information. The ENT said that it is probably nothing, but it is not typical to lose hearing in just one ear alone (unless due to noise exposure). It is always nice to have a doctor with a since of humor (I think). At the end, he asked me, have you ever seen the Woody Allen film, "Hannah and Her Three Sisters?" I said I had and vaguely recalled that in the film Woody Allen had to get an MRI and felt that he was going to surely die. The ENT said, "don't be like the character Woody Allen portrayed." I later on learned that in the movie, he was actually going for an MRI scan to check for acoustic neuroma. I had never had an MRI before and wondered what it was like. He said, "I've never lost anybody yet (to an MRI) and you're not allowed to be the first." I left not really worrying about anything.

August 28, 1995

Getting an MRI is a tedious process. It helped that I was not claustrophobic (although they do have more "open" ones available). Having explored a few caves for fun before, I figured I could handle this. The noise level was a bit unexpected. Even though they give you earplugs, it sounds like somebody is nearby doing some construction work, ala jack hammer. You have to sit still for about 40 minutes. Half-way throughout they injected a "clarifier" in me (it did not make me sick, it just felt cold at first).

August 31, 1995

The ENT had the MRI results now and placed them on the reader. He looked at the charts briefly and said, "looks like you have an acoustic neuroma in your right ear." I never heard of this condition and did not know what to think. It was indicated that it was highly probable that it was benign (90%), but it did require neurosurgery. He gave me a list of referrals, which even included going to Tennessee, where there is a renowned center for doing this kind of surgery. I decided to settle for a local location, having a family in this area (wife, two active young kids, mother-in-law) and not being made of money. I belong to an HMO, which has a default neurosurgeon. However, the ENT recommended a neuro-otologist. Since there was no neuro-otologist on my plan, the insurance company allowed an outside team to do the surgery. Of course, this process took hours of phone calls to verify and approve afterwards (thanks to my wife for handling the calls). We set up an appointment with a neurosurgeon and neuro-otologist at Georgetown. I left feeling a bit taken back by it all. The ENT deferred most of my questions to my neurosurgeons.

September 1, 1995

At work, I decided to some quick research. We have access to the internet and a high-speed connection. There are a number of "search engines" that one can use, just type in a keyword and off it goes to search the World Wide Web. I didn't really expect to find anything for acoustic neuroma, but it almost immediately came back with an "Acoustic Neuroma Homepage";. I went to that location using my web browser and read the information on there. It was fairly extensive and tried to answer a lot of questions. Having seen the list of support groups afterwards was a bit depressing. I felt that anything that has a support group must be pretty bad. There seemed to a large list of side effects that could occur.

September 2-5, 1995

My wife has a friend at NIH who works as a medical research librarian and she was more than willing to get information for me (acoustic neuroma information is not that prevalent in ordinary magazines). She found about 700 abstracts and paired them down to list of about 100 abstracts she sent me. I browsed through them all and got the full text for about 25 of those abstracts. I was happy to be getting more information, but the articles were, of course, very dry and clinical. Sometimes the articles had bad statistics on the outcome of some of their patients (in terms of a high number of people with side effects or other problems). After a while, I realized that it is important to take these things into context, some of these patients, for example, where very old or had other problems. Also, even though some of the older articles were only seven years old, a lot of advances in technique can occur in that time. I realized that being in reasonably good shape and having a positive attitude would certainly improve those statistics. To that end, I started to exercise again (I always felt I was too busy to exercise, after we had kids). Since I was a bit underweight, I also decided to "fatten" myself up by about 10 pounds in anticipation of losing some weight after surgery (it is certainly more fun to try and gain weight than it is to lose it).

September 6, 1995

I had my initial one-hour consult with the neurosurgeon. We discussed the three options. Do nothing, which would mean the tumor could slowly grow and eventually cause more damage and death (this might be an option in someone very old). The radiation approach was discussed, which would involve bombarding the sight with radiation in order to halt tumor growth and finally, microsurgery. Radiation was ruled out due to it not being as effective a cure (it does not remove it, there is a much greater recurrence rate, and greater potential for delayed, long-term side effects). Surgery was it. We got out the standard brain tinker toy model and he showed me some of the details and went over some of the potential side effects. I had mentioned to the neurosurgeon my findings on the internet and he requested a copy of the information that I got from the Acoustic Neuroma Association homepage.

Next, I was off to my consult with the neuro-otologist. She launched into a basic explanation of the disease and then we discussed the surgical options. The first approach involved going straight through the ear, it did not leave any possibility for hearing preservation, but involved a decreased risk of headaches afterwards. The subocciptal approach goes in behind the ear and can be used to potentially preserve the hearing. She felt that there was a 25% chance that the existing hearing in the right ear could be preserved. She gave me a booklet describing acoustic neuromas, it had the same information that I found on the Acoustic Neuroma Association homepage. I choose the hearing preservation approach.

Later, with the secretary ,we set a surgical date for October 10, 1995.

My three-year old son was too young to understand what would be going on. I told my five-year old daughter that I would be in the hospital for about a week. She took it well. Her main concern was that, "Mommy does not know the Jazz Jack Rabbit (her favorite computer game) secret codes!" I assured her that Mommy would receive instruction prior to my surgery.

September 21, 1995

Had pre-op hearing tests done at my ENT's office.

September 26, 1995

Gave a pint of blood for my surgery. It was remarked that the blood supply is really very good, but if you have elective surgery planned, you might as well donate your own. The nurse remarked that I had, "gorgeous veins", meaning they were easy for her (even so, a few minutes into the donation, the blood stopped flowing and we had to switch to the other arm).

October 3, 1995

Gave a second pint of blood for my surgery.

October 6, 1995

Had a pre-op physical at my primary care physicians office.

September 7-October 9, 1995

During this time I worked as usual, although the surgery was on my mind a lot and I am sure that this was keeping me from being that productive. My colleagues were understanding. Being a software engineer, I am usually on an exact schedule to complete various features for a software release. I had most of my assigned features completed, except for two. There would be no way to finish these two before the surgery (unless I worked 100 hours or something, but that would not be a good idea). So, the reaming features were put off for the next release. I had gained 10 pounds, on purpose. I was exercising every other day for cardiovascular endurance and trying a little strength training when I could. This has pressed home to me that you should never be to tried to exercise, but always do it so that you will feel better and be in better shape for injuries and illnesses when they occur. On a more philosophical note, I realized how great it is to have a competent and caring partner in life (in this case, my wife). She was really helpful, doing all the work with the insurance companies, appointments, and trying to sell our house. We had been trying to sell our house for six months with no luck. A few days before the surgery we were going to take it off the market. But, the house sold on October 5 and we bought a new (old) house that same day.

So, no moving boxes for me later on. So often during the busy schedule of the week, things go by unnoticed due to lack of time. If anything, these disruptive blows in life (e.g., brain tumors) do give you the chance to refocus and evaluate your priorities and make you appreciate the simple things you already have.

I told my 5 year old daughter that tomorrow they are going to do some surgery to remove my tumor. She wondered what happens if they don't remove it. I told her it would keep on growing. She said, "will it keep on growing and growing like a beanstalk and will there be a castle on top?"

October 10, 1995

Woke up at 4:00 am to get ready to be at the hospital at 6:00am. My wife drove me in. I suppose I was as ready as I'll every be and, at this point, was tried of thinking about the procedure and potential side effects (I had about a month to ponder all these thoughts and it did tend to occupy too much of my waking moments).

The check-in procedure was quick. I was pleased that the hospital gown can actual cover your rear (not having worn one before, I assumed that a full-moon was standard). The anesthesiologist came in and introduced himself and answered any questions about anesthesia. He wanted to know if, while we were there, if there was anything else you would like taken out, like an appendix. I mentioned a vasectomy (of course, I would have to pass on an anthesilogist performing the vasectomy). He injected me with a "cocktail". (he referred to it as half-gin and half-vodka). I don't remember much after that-no memories of the operating table at all. When I woke up next (6.5 hours later-which was short, it could have taken 8-12 hours), the operation was over.

I woke up in ICU, and remembered my wife rushing in and talking to me. The surgeons must have spoken to me earlier, but things were still kind of hazy. I remember getting some feedback that the operation had went well. I can remember testing my facial muscles and felt them working normally, which was a relief-I was sure there was going to be some damage. I had a slight headache.

I tended to keep my eyes closed for most of the time. For one thing, I was tried. Also, each time I blinked, the room tended to tilt to the left a bit (sort of like being on a rocky boat, which only rocks one way in a very rapid manner). This sensation does tend to make you nauseous, combined with the after effects of the anesthesia in your system. There is an overwhelming urge to drink afterwards because your throat is so dry. Even the act of sucking on ice chips was enough to make me feel sick. It was about a day before I could keep anything down.

October 11, 1995

Gradually, the tilting motion improved and I felt more alert. My next order of concern, albeit a minor one, was the removal of the cathedar. I had never had one before and thought it would be painful to have it removed (they insert it prior to surgery when you are asleep). The nurse told me to take a deep breath and when exhaling, she would yank it out. It did sting, but it was out in about a second. Also, it was a nice step to have it removed from me, so that I could look forward to the more common act of relieving one self. The nurse indicated that if you don't go on your own in about 6 hours, they would have to insert it again. I think I must have drank about 4 pitchers of water in a few hours and finally went. A small victory.

ICU's are not the best place to sleep. There are all kinds of monitoring devices, noises and lights. Doctors, residents, nurses, are always coming by and taking your temperature and flashing lights in your eyes or waking you for medication. With a big bandage on my side and not being able to move around that much on the bed, it was difficult to get comfortable lying in bed.

October 12, 1995

I was moved to semi-private room. It felt great to just to get out of bed and sit in a chair. Additionally, it was certainly more restful in there (although there are still many interruptions for medicine and tests, but they do that for a purpose)!

Knowing in advance that there would be only a 25% chance of hearing preservation, I was not too optimistic and expected hearing loss or total hearing loss in my right ear, so I did not think about it too much. However, after making a phone call, placing the receiver on my right ear, the hearing was serviceable and I did not have any problems. It seemed the hearing was just the way it was or maybe just a little less. In any case, this was a bonus!

I had a nurse assist me for my first walk. I was a bit unsteady, but if I took it slowly, I could shuffle around. She had her arm on me just in case, but I did not need to rely on it that much. My neck was still very stiff, it was difficult to turn my neck to the left or right.

They still had me on a bland diet and the food tasted just terrible. At 10:00 p.m., confident that I keep food down, I asked for some kind of dinner. They brought me up a turkey sandwich. I ate it quickly and noted that this was the most bland sandwich I had ever eaten ( it did not dawn on me until later to take into consideration taste alteration as a result of the surgery).

After my sandwich, I decided to go for a solo walk and shuffle around the area again.

Sleeping was still kind of a nuisance. The pills tend to make you thirsty, thus I felt a need to drink a lot and get up about every two hours. Also, they were still putting these cuffs on your legs at night to alternately massage the right and the left leg in order to keep the blood circulating and prevent blood clots from forming. I found them annoying. Also, the room was always alternating between periods of being normal room temperature and being like an oven.

By now I was curious about the taste sensation. I had my wife bring me a chocolate bar (a taste which I've always had a fondness for). I ate it and did not like the taste. By experimenting with foods, I found that, for the most part, if I just placed the food on the left side of my tongue, it produced a taste sensation that was about 70% normal (although this did not work as well with chocolate). Sweet things were off the most in taste. I developed a preference for pasta, meat, cheese, since these tastes were closest to what I had experienced before. In any case, taste sensations can certainly be expected to approve over the months. If that was one of the only side effects, it is a small price to pay.

October 13, 1995

I saw both my surgeons today and they indicated that I could be discharged today if I felt like it. I felt like it! I had to have an audiogram done and then that was it. They gave me a discharge information sheet

and then I phone my wife to pick me up.

Just as we were getting ready to leave, a former acoustic neuroma patient that I had spoken to on the phone stopped by to visit me in the hospital. I must say, it is very worthwhile to talk to former patients, they can give you a useful perspective. He happened to come at a great time (he helped carry down the plants).

I felt great leaving the hospital and was happy to arrive home. Later on that day, I felt worse due to over exertion. So, I can only emphasize again, even though it may feel good to get home, you still need to really take it easy. In my case, it was just too much commotion at home, too many stairs, and too many

active young toddlers running around.

October 14, 1995

I had a chance to observe my stitches for the first time, when we changed the bandages on our own. It looks like a 5 inch zipper behind my ear on my head. Most of the hair there was shaved away. I was at a distinct advantage here, being mostly bald anyway (there are times when this comes in handy). The stitches come out October 20!

October 20, 1995

The nurse removed the stitches (a painless affair). Changing the bandages each day was a nuisance, since removing the old bandages tends to remove hair and some skin as well each time! More importantly, this meant that it was feasible to take a shower again. The nurse mentioned that after I stop taking the steroids, I will probably feel as if I ache for a few days. I mentioned that I had developed a rash on my chest and back for the last few days. This was apparently from the steroids. I am finally off all medication on Monday, October 23. It was nice to be off the steroids (not the same kind used by some body-builders to build muscle), I think they tended to make me very hungry and thirsty, in addition to elevating my heartrate. I went out for my first drive (by myself) in the car after surgery (a short, local drive). I had no problems. There was a sight feeling of disorientation when making a sharp turn.

October 21, 1995

I had my wife drop me off at work for a few hours. Even though it was a Saturday, and I had no real work I could do, I wanted to get to my office for a while and see what it was like. I spent the time downloading some new software and "surfing the Internet". Other than a raised heartbeat for an hour or so, it could have been like a day at the office.

October 24, 1995

Woke up with a bad headache. After breakfast and a shower, still had a splitting headache. It seemed to be more on the left side of my head (my acoustic neuroma was on the right). I took 2 Extra Strength Excedrin tables and it went away completely. I had never had these before and was wondering whether this was going to be an extended event. I knew that headaches were a common side effect of this surgery.

October 25, 1995

Woke up with no headache. Developed a headache later on in the morning even though I was not exerting myself. Took one Extra Strength Excedrin tablet and it went away in a few minutes. My rash finally went away. I have observed no side effects from having stopped the steroid tablets.

October 26-30

Still getting a bad headache twice a day. Fortunately, a half-strength dosage of Excedrin clears it up in about 10 minutes. Other than the headaches, I'm feeling pretty good. I've gone for walks twice a day to build up my endurance. I'm planning on going back to work November 2nd.

November 2

No problem working for a full day. I might add, however, that I basically sit in front of a computer all day and, currently, work is not too stressful. I'm still getting the headaches twice a day. During the morning I decided to try an experiment. Instead of taking an Excedrin, I drank a cup of coffee instead (my first since the surgery). It cleared up my headache. I realized now that, since caffeine constricts blood vessels, my headaches are probably caused by expanded blood vessels in the cranial area. My headaches started when I went off of the steroids (which reduce swelling), so, this is probably tied into this in the same manner.

November 7, 1995

I had a glass of red wine during lunch. Big mistake. It gave me the worst headache ever after about an hour. My taste sensations on the right side of my tongue have improved. It is still not 100%, but I still enjoy food (in fact, I have put on a consistent 10 pounds).

November 13, 1995

Today was my first follow-up appointment with my two surgeons. I indicated that everything was fine except for the headaches. I still experience a headache about once or twice a day. I typically have some advance warning and I take an Excedrinderin or a cup of coffee and it clears up in 10 minutes or so. They mentioned that headaches are quit common and may take a while to clear up (possibly several months or more).

Having been aware of the possibility of CSF (Cerebral Spinal Fluid) leakage, there were times when I thought I might have tasted something salty in my mouth (a sign of CSF leakage), but thought it was my imagination. I was informed that if I did have it, it would be more noticeable, such as clear fluids running down your nose when bending over. Not having had anything like that, and, from an inspection of my right ear, it was evident that I did not have this problem.

It was mentioned that my tumor came out pretty easy. Some tumors can more intertwined. Mine was like a collection of "loose chicken-fat".

It seems that they still want me to take it easy (no straining, such as in trying to lift anything over 15 pounds) for a couple more months. Apparently, a heavy strain could cause CSF leakage, since it takes a while for everything to heal from the surgery.

My next appointment and a follow-up MRI is scheduled for February, 1996.

Post Note on Sterotactic RadioSurgery

During the course of doing my own research into the treatment options for acoustic neuroma surgery, I did look into stereotatic radiosurgery. I most say that upon initially looking at the results it seemed quite favorable. The radiosurgery involves directed beams of radiation applied to the tumor to stop its growth. It does not require any surgery or hospital stay. They seemed to have very good results in terms of preserving the hearing and not doing any damage to adjacent nerves, such as the facial nerve. There are several centers in the US (Staten Island, New York and Pennsylvania) that perform this.

I called (actually, my wife called) the one in New York. They felt that (not surprisingly!) radiosurgery is the way to go and surgery would leave with all kinds of bad side effects.

It is good to be skeptical, however. I had to think that if this process was so great, why isn't everyone in the medical community using this method (there are only a very small handful of centers that do this)? Granted that surgeons may be biased towards surgery, but I would have to feel that if a non-surgical method offered clearly superior results than they would not do this surgery just for the sake of doing surgery! The short-term results looked good, but what about the long term results? Radiation tends to induce more delayed side-effects. What would the side-effects of the radiation, 5, 10, 20 years be from now? I don't think really long-term effects have been that well established. Bear in mind that the radiation does not remove the tumor (it may shrink it, however) and it will leave some scar tissue, making any future sugary more difficult. I wondered too much about the long term side-effects and it seemed that the recurrence rate with stereotatic radiosurgery was much greater than with surgical means (2% verses about 30% from what I recall in one study).

All of this just goes to show that with any complicated medical procedure, it is possible to be mislead into a procedure which might not be the best possible procedure for you. It is important to get several opinions and have information from several sources. In my case, I was temporarily seduced by the seemingly good results with radiosurgery and the easy application of the treatment, but this was not the best treatment if you consider what the longer term effects might be.

I hope this account offers some insight. Even though this is major surgery, the results can be quite good-don't get too discouraged reading clinical neurosurgical journals! I consider my results excellent and would have to credit that to the exemplary surgical skills of my neurosurgeon and neuro-otologist at Georgetown University Medical Center. I would also like to commend the nursing staff as well, they did a great job!

Acoustic Neuroma Surgery: A Patient's Perspective

by Gary Hunt

Disclaimer About Medical Information: The information and reference materials contained herein is intended solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's own physician. All visitors to this and associated sites from the Neurosurgical Service at MGH agree to read and abide by the the complete terms of legal agreement found at the Neurosurgery "disclaimer & legal agreement." See also: the MGH Disclaimer, the MGH Privacy Policy, and the MGH Interactive Program Disclaimer - Copyright 2005.
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